what’s gonna work?

{image is a photo of the Wonder Pets, under which the text reads, “What’s Gonna Work?” (The next line is the song is, “Teeeeeeamwork.”}

The other day, I posted a story about a lovely conversation that I’d had with Brooke’s SLP about her IEP (Individualized Education Plan.)

The truth is, I’ve grown hesitant about writing some of that stuff, even when, or especially when, it’s good. The response tends to be mixed, from “That’s awesome,” to “I wish we had that too,” to, “You have no idea how lucky you are.”

In order:

Yes, it is awesome.

The fact that not everyone has it keeps me up at night and is a big part of why I do what I do here. (And why I support organizations like this.)

And yes, I do. I really, really do.

And then there are others who ask me to talk about how we’ve had the success that we’ve had with Brooke’s various teams over the years. But I don’t, because, well, see above.

We live in a place where resources may be tightly stretched, but exist. Where even when we’ve run into trouble, there’s always been someone in the room, or at least in the system, who we knew we could trust.

English is our first language.

We are comfortable speaking to people, calling for and running a meeting, playing politics when necessary. We know a lot of people and have access to resources and information. We’re visible. We know our rights and our child’s rights. We live in a state that requires every town to have a special education parents advisory council, providing easy access to other parents of kids with special needs. We have insurance, and though we are no longer as comfortable financially as we once were, we still have enough money to get a neuropsych evaluation every year, providing insight into Brooke’s unique constellation of strengths and challenges and, along with it, a concise road map of recommendations regarding her support (and an added advocate on her team who can don his “Expert” hat and speak for us if necessary.)

We have a LOT of things that really shouldn’t matter as they relate to a child’s educational needs being met, but sadly do. And I know all that. And I’m grateful for all that. And it’s a big part of why I’m extremely hesitant when it comes to offering advice about how to handle IEP meetings.

Clearly, I’m going to do it anyway. At least a little. Because when it comes down to it, I think that the crux of how we approach the process would be no different were we in a different situation. In fact, we’d likely just be more emphatic about our strategy. It’s this …

We have walked into every meeting, not hoping or assuming, but acting as though it is a cooperative environment. We have addressed every email to Team Brooke. We have carried ourselves as though we were all on the same page and the most important thing in the room was our daughter’s success. Most of the time, it’s been true. So we’ve simply acted, well, natural. But I do believe that the tone that we set matters.

We start every meeting by thanking the staff for what they do for our kiddo every day. We usually offer up a story of a recent success or something funny that she did to which they, at least indirectly, contributed or which we know they’d appreciate. We almost always bring food, coffee, something. Nothing elaborate, just something. Something to say, “This is a human interaction and we’re all in this together.”

And when we run into trouble, when we bump up against people who seem to be working not for but against our kid, we remind ourselves that there are pressures on them that we may not see.

So before we pounce, we ask how we can help. We ask if there are resources that they need that they’ve had trouble securing. We tell them that we’d be happy to work with them to beseech the administration, or the school board, or the state for whatever it is that they lack. We ask if they need volunteers. We make it clear that we are there to help them to help our kid. We are, in every sense of the word, a team. So we act like team members.

We offer information. We tell them what we’ve been working on at home. We ask for their ideas and expertise. We tell them that no question is too small. That we are always, always happy to hear from them – about anything. We tell them that we are always available to brainstorm ideas if they come up against a challenge they can’t solve.

When they ask for our thoughts, we give them. We talk about our girl. A lot. And as we do, it becomes pretty clear that we know what we’re talking about. We’ve done our research. We’ve talked to other parents. We’ve talked to autistic people. We’ve learned the law.

Those things shouldn’t matter, but they do.

Above all, we go in expecting to be working together. And, as lucky as we are to have all of these other factors in our favor, I think that matters too.

Recently, a reader commented that she would hate for a first time parent to go into a meeting ‘unarmed’ and expecting an experience like mine.

This is what I wrote back.

We also don’t want first time parents to go into these meetings with guns blazing. I think it’s wise to be wary and certainly well-versed in the law and the process, but so too, to model collaborative rather than preemptively combative behavior.

I’m always ready to fight if I have to, but I find that if I start by assuming (at the very least) good intentions, we are usually able to work together – rather than as adversaries – to find solutions.

Many times, I have found that those in the trenches who act in a way we’d prefer they not are doing so because of administrative pressures, not because they don’t want to serve our kids. When we come in and make it clear that we’re all on the same side and if we need to petition for more resources together, we have gotten a lot further.

That said, there have been times it’s gotten rancorous, but more often than not, we’ve been able to find or create solutions without acrimony and I do think that at least some of that is due to the fact that we save the piss and vinegar until we need it.

Sometimes there’s no choice but to unholster the guns. We’ve been there. It’s gotten ugly. I’ve said things that I hoped I’d never have to say.

I’ve threatened to sue, praying that I wouldn’t have to, but fully prepared to follow through. I told a case manager that she was the one who was going to have to look herself in the mirror in the morning. I told an administrator that if anyone ever said to me what she just had again, that I’d be coming across the table. I’ve sat across from two people sitting next to each other and said, “The two of you can’t both be telling the truth.”

You didn’t hear about those things because they weren’t remotely appropriate for me to write about as they were happening. Given that years have passed now, I figure the statute of limitations is up. At least without details. There will never be details.

But even when things were contentious, at each and every meeting we started again. With cookies and coffee. With a story about our kid and something she did to which they, at least inadvertently, contributed. With gratitude for the people in the room who show up for her every single day. And we talked openly about the need to build and rebuild (and rebuild again) trust. To be a team. To check our egos at the door. And to work together for the only thing that mattered – our kid’s success.

And because of that, more often than not, we’ve been able to work together, rather than as adversaries, to find solutions.

I know exactly how lucky we are, but I’m pretty sure our strategy would only be more if we weren’t.

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25 thoughts on “what’s gonna work?”

Amazing advice! I’ve been through a lot of meetings (I have a 19 yr.old daughter) and think you are spot on with your thoughts. You got me thinking… Question if I may? Do you think yearly neuropsych evals could be helpful at my daughter’s age still… and maybe into early 20’s?

we probably wouldn’t do them yearly if not for their impact on the process, but every eighteen months to two years, definitely. they ain’t cheap, and sadly insurance only covers them partially, but i find them to be extraordinarily helpful in giving us insight into how to best support brooke (as well as keeping her diagnosis up to date so that it never becomes an issue should she need to qualify for something.)

I love this! You wrote it at a great time. Thank you! It happens that I had an IEP meeting about summer ESY. They decided that my son could get 2 days and I thought he was eligible for 3. I did get the 3 days but only because the county representative saw that I had brought proof and wanted explanations of why he couldn’t get another day. During this process, I had his teacher rolling eyes, and getting very upset. Now we have to do a transition meeting, and I’m scared that my son won’t get what he needs because of the last meeting. I would like to start with this new team on a better foot. But also make sure that they know that I’m not going to be pushed around. The representative did give me a resource for our county. So, I guess if I run into trouble I can go to that.

Nicole, I went to an IEP meeting last month and had a mother tear up as we were discussing discontinuation of therapy services. She and her husband put out their case for the services and ultimately it was decided that he would receive the PT once/week. The district chairperson asked me after the meeting if I was okay with that and I said of course…that is why we meet as a team to make decisions. Then I sought out the mom to let her know that I had no problem with the outcome and would work my very hardest with her child next year. The only way we will help our kids grow is to work together. I am sorry that your teacher got upset and rolled her eyes. No one should EVER get upset with a parent for advocating for what they feel is best for their child. Most educational people love the kids and want what is best for them. I would assume that the new team will be cooperative until you find out otherwise. Good luck with the transitional meeting!

Thank you! We have always worked hard to create a team environment and cringe when parents advise to go in threatening and arguing. We are always firm, but polite and have a reason for everything we ask. And have had staff at times tell us they like to leave our meetings for last as they are so pleasant! But as you say that’s not always the way it works, and we have had to fight a bit too. And file formal complaints. But it does go easier when everyone is not fearing the meeting but welcoming it!

We have had both really great interactions and then lately complete disasters during our IEP meetings. Also the older my son gets the harder it becomes to assume the best intentions on the part of the administration when the rest of the team clearly disagrees with their suggestions. In the end it’s all about money no matter how optimistic you try to be. An advocate helps so she can push for the things that I can get emotional about being his mom. That doesn’t mean I haven’t cried through the meeting while talking and making my points very clear. (bring tissues!)

It took us almost 2 years of trying to persuade our district to approve an outside placement before my son just completely stopped going to school while we talked and talked. (God bless grandma’s that are able to stay home with him until the opening is available at the new school.) Unfortunately he’s lost 2 years of effective progress and has refused to go to school for the last 4 months so even getting him into a new school will be challenging at this point.

Looking back I wish I wasn’t as nice… If anyone knows of any groups for 9-12 year olds out in Worcester county I’d love to get info about them.

ugh. it’s so hard. and yes, nice only works until it’s not working. i’m glad you have an advocate. when things feel irreparable, it’s so helpful to have someone at the table who can help. i’ll ask a friend who lives closer to you re groups. if she knows of anything, i’ll be back.

Hi! I have some ideas for you 🙂
Give me a call over at SenseAbility Gym. I have some new ideas. Besides us, there are some great places that have sprung up with wonderful activities and groups (Diamond is the Sky, Speech and Language in Milford just to name a few).

Doughnuts…bagels…or in our case my husband’s amazing chocolate chip cookies….you are so correct it sets the tone…..as far as a resource I always go to Wrightslaw as my Bible per say for anything special ed. I can’t tell you how many times I have referenced that book. Wrightslaw does say to check emotions at the door, but some of the most powerful moments in IEP meetings have been the joyous moments of sharing the success or our son, but also being vulnerable in a meeting and crying. If tears come during a meeting then I say let them come. We are talking about our kids and it is emotional. Wrightslaw may not agree with me, but this mom has cried during many a meeting and found comfort from the team that helps not only our son but our family.

I am glad that I don’t have to go through the IEP process, for now, after withdrawing my son from public school 2 years sgo. At our very first IEP meeting when he was transitioning from the early intervention program to public school at the age of three and shortly after his diagnosis, the district SLP that was part of the team wrote in the report that he would NEVER speak. I had to fight her to have that sentence removed from the report. I didn’t want anyone to read that report and give up trying to help my son with verbal communication. She made a huge deal out of it I was very glad that the SLP that he worked with during early intervention, and that I brought with us to the IEP, didn’t have the same opinion. She backed me up and ultimately, it got removed. The word NEVER has no place in an IEP.

P.S. My son can speak a few words now, but more importantly can sign tons of things to communicate with us. He is thriving in his new environment!

As someone who has just recently cried all the way through an annual review meeting thanks to a Headteacher who called me negative (I had forgotten for the first time ever to follow the positive sandwich rule, and had jumped straight to our girl’s needs when asked!), this is all spot on, I get it and try to follow this most of the time. But we all have off days, and times when we slip up, and I figure we shouldn’t be too hard on ourselves when we do. Take a rest and back to the smiley face the next day 🙂

I hate to be Debbie Downer. This sounds great – really great – and I agree that attitude and cooperation go a long way. That’s how I approach things also – But at the end of the day, it’s freakin HARD. I think it mostly boils down to money and time. I know families who struggle to feed their kids. Bringing coffee or donuts to a meeting of people is out of the question. Let’s not talk about the price of getting an advocate. If you are a single parent with more than 1 special needs kid (and maybe more than 1 job) offering to volunteer is not do-able. You just don’t have the time. Many parents are so burnt out and exhausted, the idea of donning their chipper hat to deal with people who are going to tell them that every and anything they want for their child is not in the budget is hard. Sueing is not an option. There’s no money or time. You mostly have to take what you can get and work with that even though it’s woefully inadequate. I wish things were different.

Oh Jay Train, you sound exhausted. I am so sorry that this is hard and you are right it is. Actually, where I work, we supply the snacks…cookies or donuts or fruit bites and so do not need anything. We do try to make parents comfortable at our meetings as we want a cooperative venture too. Regarding advocates, you might try asking Medicaid (if your child is enrolled) for an advocate at no cost. Some nonprofits also offer this service free of charge. If nothing else, inviting a trusted friend who has your back may work for you. Many schools are experiencing record deficits in their budgets and you are right that this reality bites. The schools where I work try to rise above those challenges to get kids what they need but I know this does not always work out. If you disagree with the IEP, you can go through due process to challenge it at no cost to you here in NY. Anyway, good luck.

Thanks for all that Kathy. 🙂 I appreciate it and maybe someone will benefit from the info but I wasn’t speaking about myself. I was just saying that because I know people in that situation. People who have to take time off work to go to IEP meetings but they can’t afford to take the time off because they don’t get paid if they don’t go. Also, some of these people work “too much money” to qualify for Medicaid or any other govt help. They make too much as far as the govt guidelines are concerned but they are seriously struggling financially. It sucks.

As I read this, I was proud to realize that I have already implemented much of your strategies entering both of my kiddos’ IEP meetings. They have worked well over the last two years, at least with the front-line team. It is when administrative personnel enter the picture that things tend to get rough. The people who know little of my boys from personal experience, the ones who hold the purse strings, they are usually the ones who bring the tension. I am entering into a new phase, as my oldest is transitioning into a school district with a $1.6 BILLION deficit. Tensions are running high over the inaccessibility of funds and resources. I promise you that I am not asking more than what my child reasonably needs in terms of successfully progressing in his educational goals. Many of the things I have asked the team to include in his IEP only require time and attention, yet the administration is balking at every request (even when it is backed up by legislation and scientific research). Since I have already had some serious issues with the transition process, I have asked a Facilitator and an Advocate to accompany me to the yet unscheduled meeting (the school year ends in a little over a month, and my child does not yet have an evaluation report, an IEP draft, an LRE placement recommendation, or even a date for an IEP meeting). I know that entering the room with these two, and the rest of my child’s old team, will look like I have guns blazing, when really I feel like they are my Flak jacket. This transition meeting is run by the administration, and not the front-line team that will be working with my child every day in the near future (although that team will be in attendance). After reading your blog post, I see how this will look and set a tone, and it is regrettable, something I will have to atone for with the school based team, but necessary considering the circumstances. I feel that, considering the issues that I am already experiencing, I would be a fool to enter this meeting without an advocate and an impartial representative of the state. I really hope that I am not wrong.

You are not wrong. Having people beside you to assure your child gets the services he/she needs is the ultimate goal and unfortunately administration has to watch the bottom line even when the front line staff want to do what’s best for your child. Just know what you are willing to be flexible with and what is a flat out no holds barred need so you have some realistic expectations walking in. Their support will only help your case and might even support the front line teachers to provide honest input despite the district’s opinion.
At one of our meetings requesting an outside placement the SPED Director said “I don’t feel that we’ve exhausted everything we can do in this program” and my response was to ask “what can you recommend that we do differently to make an actual difference in the situation come Monday morning for my child?” To my surprise he tossed out a number of things that were very pertinent to my son that we were willing to agree to try implementing. (ultimately all of our changes were unsuccessful but it showed that we were willing to be flexible until the time came that it was their turn to admit it wasn’t working in this setting). Had we brought an advocate or most specialists into the mix earlier we might have avoided the drawn out situation we are currently experiencing.
Having them there doesn’t mean you aren’t there as part of the team but it shows you are determined and know your child as only a parent can.